A Friend Gets an IPF Diagnosis, Then Sees It Taken Away
The long journey to finding out what you've got has detours in many cases
“While walking on the beach yesterday, I realized how I’m feeling about PF, in general, is like the tide. There are times like now that I’m riding the high tide, full of energy about taking on PF activities (hosting PF get-togethers, participating in fundraising walks). Then the water is gone, and I’m standing on vast stretches of sand, and the energy of the water is in the distance. I feel stranded at low tide with my feet in the sand.
“It’s a cycle that leaves me weary.”
This quote is from Sharon Eon. She sent me a text message on a recent morning to tell me how she was feeling about pulmonary fibrosis (PF). Sharon and I met in early 2020, both of us having been diagnosed with idiopathic pulmonary fibrosis (IPF). Over the next 18 months, we each prepared for the future with IPF being the driving force in everything we did or planned.
Diagnosis is not a perfect science
The IPF diagnosis can be a prolonged experience. In my case, it took about four and a half months. To get mine I had a chest X-ray, followed by a high-resolution computed tomography scan, bloodwork, and pulmonary function tests.
My diagnosis process was initiated by my primary care physician, whom I’d been seeing for more than 18 years. She’d never encountered a case of IPF before. She referred me to a pulmonologist, and afterward a second pulmonologist completed my diagnostic journey. On Jan.31, 2017, I was diagnosed with IPF.
Cases like Sharon’s, however, demonstrate that it’s not a perfect science.
IPF is a needle in a haystack
IPF is typically a diagnosis of exclusion of other interstitial lung diseases. The potential causes of pulmonary fibrosis are many. When these causes are exhausted, the answer becomes IPF.
The difficulty of diagnosing IPF is also frustrating to the medical community. Medical professionals around the world have worked together to develop international guidelines for the diagnosis of IPF. Clinicians recognized that the symptoms in interstitial lung diseases are similar and created these guidelines to develop a road map for the diagnosis of IPF.
Sharon had many of the same symptoms I had. Her clinician started her on an anti-fibrotic. She was planning her future based on that initial IPF diagnosis. It was only when she was seen by a pulmonologist in a care center network hospital that she learned her diagnosis wasn’t correct.
Today, Sharon continues to be followed and has regular pulmonary function tests. She has no definitive diagnosis, so she waits.
Misdiagnosis — more common than you think
Misdiagnosis is more common than you might think. More than 30% of patients need two or more years to get a correct diagnosis. Many of those diagnoses end up being chronic obstructive pulmonary disease or asthma.
Now she waits
Sharon’s condition continues to be stable. She’s still involved in the PF community, helping others navigate their journey. Her experience and her story have helped countless others.
As PF Awareness Month draws to a close, I knew I wanted to write a column about the challenges of diagnosis for the IPF patient. Sharon and I developed a strong bond almost instantly when we met. It was perfect timing when she sent me that text message as I was writing this column.
Not one to sit idly by, Sharon continues to live her best life. With her husband, Mic, by her side, they’re living the life they imagined their future to be. They’re determined to make every breath count.
Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.